Sunday, 20 June 2010

Operation tooth and nail

A general anaesthetic is a worrying time for any parent, but even more so when you can’t explain to your child what’s happening and they have severe self injurious behaviour and nearly 6ft tall!

Just to look at C’s teeth and cut his nails.
The day went as i thought it would apart from a slight detour!

The best interest meeting had gone well. We had been referred to a private hospital because it is smaller and quieter. Through the Challenging Behaviour Foundation parents email network it had been suggested to use Rohypnol as a pre-anaesthetic as you can’t taste it, smell it, it knocks you out and you can’t remember. Perfect. But in the UK it is not licensed, if you have an understanding GP you can get it privately. C’s GP agreed, a week later changed his mind. He also wouldn’t give permission to do a blood screening (haven’t a clue why?    Not wanting to take responsibility? )

The hospital wanted C to go in and have 3 MRSA swabs (underarm, groin and nose – I don’t think so!!) and they wouldn’t believe C’s manager that there was no way C would allow this intrusion, they were adamant as they had much experience of autism before!!!! This is when the label autism isn’t much use as people have general pre conceived ideas.

C went to the pre-op meeting with an entourage. Me, key worker, home manager and the service provider’s psychologist. So I felt well supported. We had agreed beforehand that we would not restrain C as this is just too traumatic for all.

Again they went on about the swabs, I tried to explain about the intensity of C’s SIB but it wasn’t until our psychologist said firmly he could fracture his skull that we got through to them. They were very good after that!! C also did some happy head banging which shocked them which also helped. They also didn’t agree to the rohypnol, but did agree to taking blood and cutting his nails.

The day of the op soon came. We gave C 10mg diazepam before leaving the home. C was going to be first on the list but because no MRSA swabs he was last so we had to wait. Wasn’t too bad as C was oblivious to what was about to happen. 25mg of midazolam was given to C in a drink – enough to knock anyone out. But not C!! He had other ideas, as soon as he had finished the drink he looked at me and then ran and lunged at the wall smashing his head, he did this again and again and again. I tried in vain to distract him, stop him to no avail. He wasn’t going to stop. I looked at the psychologist through tears and we all agreed to leave.


We walked out the hospital. Shocked hospital staff chased after us. (Like a scene from Benny Hill I can sort of laugh about this now but at the time it was very serious) Got in the car as staff tried to talk us into staying as they were worried about C’s breathing, C continued to head bang, so we drove. C calmed and was now fighting tooth and nail to stay awake. The hospital phoned me on my mobile and we went back to talk to them. The consultant and various staff were waiting for us at the road side. I agreed to give it one more go as apparently now 40 mins on the drug was at its peak and they assured me that C would not remember, and I didn’t want to put C through all this again another day. A wheel chair was brought out as they said C would not be able to walk. I opened the door, C got out and walked! Much to the amazement of staff. He was pliable enough now to let us guide him straight into the theatre where we held a mask over his face until he did eventually pass out. We were ushered out.

Didn’t have to wait long till we were called back. Blood had been taken, his nails were short (looked weird) and they had done 1 filling (which could explain some of C’s unexplained SIBs?) there was also some erosion on his back teeth from reflux. But after 21 years of not being able to brush teeth and poor diet – quite impressive. The consultant said because of the 'trauma' to Cs head he would recommend a referral to a ......... dermatologist?!! And C would not have to come in to visit a dentist again – the dentist would go to his home annually. So maybe they did learn something that day?

We were then told C would sleep for the rest of the day because of the amount of drugs and GA in his system. Half an hour (I held C’s hand for a whole half an hour :))))  ) later C was awake and up. We were out of there!

So we got there in the end, but at what cost to C’s head. It’s frightening and left me feeling emotionally exhausted for a couple of days. How it made C feel I can’t imagine. We have to do this again in 5 years. I will push harder for rohypnol next time. Has anyone any experience of this - or anything else that would work better?

I really hope they are right and C won’t remember.

63 comments:

Stimey said...

Your stories about C are amazing. I learn a lot from them. I am so sorry that you and he had to go through all of that. You're such a good mom. And I'm so happy that you got to sit and hold his hand. That's lovely.

Cheri said...

I have no experience with rohypnol, but I am very glad things turned out well for C. When Zach was about 1 1/2 years old he needed a CAT scan to determine why he was having bad headaches. Because of his age, they gave him something to knock him out. It took 2 hours and a second dose to finally get him out. It is a strange feeling to watch your child who has no idea what is going on fight so hard to stay awake! I'm glad you have people now (again) who will take you more seriously when you explain to them what will happen. They always know best till they see it for themselves, don't they? :)

Maggie May said...

My heart goes out to you both..... it really does and I wish I could answer your questions but you know that I can't.
No one should have to go through this terrible ordeal. Forget about the five years for now. No point at all in worrying now.
Maggie X

Nuts in May

Deb said...

There is another drug called Midazolam that also causes amnesia. We use it a lot for conscious sedation.

I had to laugh about you leaving in half an hour. Same with Katie. We were supposed to wait for an hour or two as well but after Katie bit the IV tubing in half, they let us go sooner and couldn't hide the looks of relief on their faces.

I hope both you and C are well. Take care.

Kit Courteney said...

"I held C’s hand for a whole half an hour :))))"

That's lovely!

But what an ordeal for both of you. Let's hope things improve greatly before either of you has to go through that again.

KWombles said...

I'm glad you're both through that, and so sorry that it was such a rollercoaster. ((())) I hope he doesn't remember, either.

JoyMama said...

I'm glad that you got done what needed to get done for C. -- but why, oh WHY won't they just LISTEN to you?!?

feebeeglee said...

I don't recommend Ketamine - my friend's spectrumy kid, at age 2, took enough to knock out a 250 pound adult.

You and C are so fantastic. I hope his poor head is okay. I am sure that he doesn't remember much of it.

Debs said...

What a strong chap C is. I'm so relieved this is over for you both for the next five years, but why they don't pay more attention to what you tell them I don't know. Hopefully next time they'll give C the Rohypnol.

Jen said...

Not listening to the people who know C best is just crazy. I hope is ok now and won't remember a thing. Jen.

Joeymom said...

Poor C! I hope he doesn't remember, and that hospital learns that not everyone reacts to medications in the same way. And that proper meds get licensed soon.

Crystal Jigsaw said...

I'm glad you've got through it, albeit with tremendous difficulties. What is it with professionals and know-alls? Isn't it about time our so called experts knew more about ASD's? Parents are expected to go on courses, learn about their child inside out and be an advocate 24/7 yet these highly paid professionals could learn an awful lot by just talking AND listening to the parents.

Take care, Love K xx

kristi said...

TC had to get sedation to have teeth work done a couple of years ago. It was rough. How is C now?

Mrs. C said...

Oh, yeah, they've dealt with "autism" before... wish there were a "listen to the patient advocate" law out there. That's why it's called a SPECTRUM DISORDER!!

I hope C is recovering well.

starrlife said...

Why don't they learn to listen to the patients? Why, why, why? Arrogance? geesh- poor head....
Brave Mom. Rohypnol is the way to go - my mom is a nurse and she insists on it. I know how hard it is to see your child scared and fighting in that kind of situation. My daughter, post cardiac surgery, ripped out her chest tube and the looks on the nurses faces!They were stunned since they did not respond fast enough thinking that she wasn't strong enough.... geesh again!

kim said...

my heart goes out to u both. Your stories are so inspiring for other moms with kids on the spectrum. I also had to laugh of your benny hill comment. I always think, well I can laugh or cry...usually i cry at the time but laugh later like you.
But, how wonderful to be able to hold his hand.

Chris H said...

Bloody Hell what a drama! I'm glad it's over now and C has had his treatment.
I bet he DOES remember it when the time comes for him to go through something like that again! I sure would.

Kim (frogpondsrock) said...

Half an hour (I held C’s hand for a whole half an hour :))))

I am pleased that you could have that time holding your son's hand. xx

nitebyrd said...

For both your sakes, I hope C doesn't remember the experience. I also hope he's doing okay now.

Tanya @ TeenAutism said...

Such an ordeal - I'm so sorry to hear about the head-banging. You and C are always in my thoughts and prayers.

Marita said...

You got to hold his hand for 30 minutes :) :: tears of joy ::

I'm sorry it was so hard :( Praying that when you next have to face this you can get the Rohypnol or similar drug to give to C before hand.

Warty Mammal said...

Hugs: ((( )))

You did really well. I'm sorry it was rough, but I'm glad it went as well as it did. Sounds as though you got through to a few people in the process.

Anonymous said...

Amazing how these drugs seem to have different effects for our kids. Mine can't be knocked out easily by sedatives either- it takes a whole lot more to put him to sleep for procedures and even then, takes only the slightest stimulus to wake him up. It's as if his body is always on full alert.

I'm glad this episode is all over, though. I can only imagine how overwhelming or how frightening ti must have been for C. But it's great that you were with him to support him and watch over him during those long hours. You're really an inspiration to us all.

Hope C is doing well again. Hugs to both of you!

♥Kittymama
http://okasaneko.wordpress.com

a said...

I hope you both have recovered. My littlest one has to have an op soon. Needs a GA, absolutley dreading it. :0(

farmwifetwo said...

Neither time mine had a GA was there any trouble. They did wake up quicker than most though.

I did knock my eldest down to do an allergy test. And even though he couldn't stand it still took 3 of us (Ped, me, student Dr) to hold him on the bed - not surprising since he's severely claustrophobic - which we were starting to figure out at the time.

I also dealt with the headbanging and my eldest son now saves it for when he's very pissed at me and he loses his priveledges immediately. I have issues with people claiming it's "communication", even back in the days when he was non-verbal. It can kill... which is enough reason IMO to deal with it when they are small.

Little boy (autistic, non-verbal) goes today for a pre-admit appt. We have a dental surgery appt in a couple of weeks. I don't anticipate any issues.

Niksmom said...

Oh, my heart goes out to you and C! First, I'm so glad that the dental situation was not as bad as might have been expected after so long w/o being able to brush. That's fantastic news and bodes well for future care. :-)

I LOVE that you got to hold C's hand for so long! That warms my heart.

It sounds like C had a paradoxical response to the midazolam/versed. Nik has that kind of reaction to the diazepam. We tried a small dose once for a dentist visit when he was 4; he responded exactly like those scenes in the movie where the large man is strapped to a gurney and goes berserk to the point that he stands up and starts swinging the gurney around and knocking people out/over. It was ugly and extremely traumatic; his records have been amended to include the fact he cannot take that drug. You may consider the same with the versed/midazolam.

For future procedures, you might ask about Propofal; it has the same amnesiac effects as Rohypnal; it's referred to as "milk of amnesia" by many in the medical profession! It is one of the only drigs which works on Nik w/o the horrifying paradoxical response.

I hope C has fully recovered from his surgical experience and that you have as well! Sending big hugs from across the pond. xo

Akelamalu said...

Such a traumatic experience for you all - I feel for you. :(

Julie L. said...

Am sorry that the experience was so stressful for you and C. Am glad you went with a lot of support. Hope he doesn't remember it. Am amazed at how his metabolism seems to work in terms of how drugs affect him so differently than most people. That is a good point you made about people have preconceived notions about autism. No one person on the spectrum is the same. I think those of us involved in awareness and advocacy try to convey that, but the message doesn't always reach the people who need to hear it the most. Hugs.

DJ Kirkby said...

I hope he doesn't remember either though perhaps he'll remember how nice the Diazepam felt at it's peak? It's fab that the dentist is going to come out to his home once a year but what good will it do, will C let him have a look? I don't think so! Amazing what fantastic shape his teeth are in though...
What did he think of his short nails?
xo

Jean said...

The trauma of the whole event sounds exhausting for you both. I'm glad it's over, and maybe next time will be a little easier XXX

jazzygal said...

How exhausting and traumatic for you both Casdok. Although I did have a little giggle at the Benny Hill reference!!

The thing that struck me most, from the first few lines of your post, was ...why don't they listen to you, and your team??? The age old problem, eh? They know best. I do hope they've learned a lot from your trip to their hospital.

Thinking of you both. xx Jazzy

Ron said...

Hello Dear Casdok~

WOW...just reading this, I felt like I was there experiencing this myself. No doubt that you were emotionally exhausted. So would I have been.

My friend in Florida (who you've heard me mention before) has had a somewhat similar experience with her son while on a long road trip in the car with her husband. I'm not sure which drug they gave her son, but whatever it was had little to no effect on him. They actually had to turn around and come back home after a 16 hour drive.

Hope all is well with C now.

Sending much good energy and love your way...

(((( Casdok + C )))))

X

Lane said...

Oh my how traumatic for you and C. And how frustrating for you not be heard

I'm so glad you got to hold C's hand for half an hour.

K- floortime lite mama said...

I am crying here
My hat is off to you -- you fantastic fantastic mother
I really hope Cwont remember
Sending you loads of positive vibes

Jayne said...

We've had the same issue with drugs not having much effect on our son at times, seems the half life of drugs in people on the Spectrum is much shorter, time-wise, than in 'normal' people.
A psychiatrist once agreed with me that the faster metabolic rate in ASD people does have an effect on the effectiveness of medications but it's all too hard for them to adjust rates for individual people, let's stick to the general one-size-fits-all rubbish.
(((hugs))) for you and C.

kathleen said...

Oh what a day for you((()))...I assure you-at least from our experience C won't remember..We had to have a brain scan done of my oldest when he was 4. As they were putting the mask on him-after assuring me that the sedative they gave him would "knock him out" (ha!) He screamed "Mama! Help me!!Help!!! He did not remember it the next day..and now he thinks it is rather funny(after I told him).
When my second son went in for a brain scan..the sedative didn't work on him either..sigh

I too loved that you held C's hand for a whole half hour..and you know, I'm betting that he remembers that. lovely. :)

kathleen said...

I can't believe that I forgot to ask!!! How did C respond to his short nails? Is he liking it? I always wind up having so much to say-but am just not good a quick comments...sigh..:)

Casdok said...

Not sure what he thinks about his nails but he has been a lot happier since, so the filling has made a difference :)

Looking for Blue Sky said...

Wow, whenever I read your blog it puts my son's issues in perspective and makes them seem so small. Something that is so simple for everyone else yet so traumatic for C. Just wondering if there is any way of checking if he remembers? Smiley used to cry at the sight of a white coat for years, but not now. If you took him to the hospital for a visit, would you get an idea if he remembers by his reaction? Hope this isn't a silly suggestion and so glad to read that he is happier since his filling x

Suburbia said...

Gosh, how traumatic for you both. I feel so indignant for you that the Drs. think they know best.

Smileyfreak said...

Well done. I know it was difficult but you did a great job :) the best that you could.

shalom said...

You are a wonderful mum. Hope C is great now. http://chasong.blogspot.com/

Jen said...

What a nightmare- I'm sorry that all of you had to go through that. A dermatologist? I'd love to know why they think that a dermatologist could help with head-banging?

I don't have any suggestions on meds, as we've found that different things work for different kids. One of my kids is relaxed (almost) to the point of unconsciousness by one Benadryl (Diphenhydramine), while it sends the other two into a frenzy of activity :-(

That is good news about C's teeth though- sometimes there are very small silver linings that are still good news.

Honeysuckle said...

Oh, goodness, how scary for all of you. It's so much better to be suppirted in these situations, but even so...
Is there any chance the rohypnol might be licensed for UK use in the enxt 5 years?

Tera said...

I feel so relieved it's done and over with. And though it was rough, I bet his hand felt just lovely! Thinking of you guys!

TherExtras said...

Glad to see others have med experience to share. At first I was relieved to read 5 years before the next time, but can his nails go that long again?

Glad to read he is feeling better, too. Admiring your resolve to do what is best for C and grateful you had team support. It is not easy to buck those 'official' people. Heh, just like in the movie, I can imagine!

Barbara

Hammie said...

That is incredible about his teeth! Amazing and a huge relief I guess.
I'm so sorry they didnt listen to you. You really did well to stick with it and get it done.

Lets hope the next HOME visit goes as well.
xx

Joker the Lurcher said...

you must be feeling totally bashed up, both emotionally and physically. i hope things have settled down and that C hasn't done too much damage to his head. hugs.

MMC said...

Wow, I am sure you are relieved that is over!

C's story brought back lots of memories but thankfully none of ours were ever that bad. I remember them giving the Blue Jay something so they could get a CT Scan during her first bout of seizures [way back then, I didn't know enough to pay attention, but it was likely valium (diazapam)] though. Guaranteed to knock her out, they said. She was only 13 months old and was up for 12 hours straight after that. The next day one of the drs remarked that next time they would try a hammer!

We've also gone the OR route for fillings (for both my girls actually). So, yeah ... just glad it's over for both of you. I don't have any direct experience with Rohypnol but from what I've heard, I would recommend it. Either that or the Propofal (suggested above).

BTW one time after a particularly bad experience with a dr filling in for our family dr, I asked the famly dr if he could please put a note on the front of the Blue Jay's chart - "Please listen to this parent. Sometimes she knows what she's talking about." He thought that was quite funny. Little did he know that I was dead serious.

Dr. Deb said...

You're right, this is a very hard issue to explain. Here in the states surgical centers for dentists use intravenous meds to make sure the patient if fully out. Could that be arranged?

Casdok said...

This was discussed but there is no way how ever many of us would have been able to restrain him to do that!

Club 166 said...

I'd say, all things considered, that that went relatively well.

Perhaps C will let you file his nails now, so he won't have to have them cut.

Joe

Casdok said...

Thats what we were hoping, but no joy with either teeth or nails!

Palm Springs Savant said...

Wow. To be honest, I never stopped to think about how difficult something like that would be for someone like C.
Enlightening.

Petunia said...

Sounds awful. Hopefully now they'll listen to the people who know C best and next time will be less traumatic for you all. So glad its done for you now xx

Elizabeth Channel said...

How exhausting for you both, and I am so, so sorry. That's amazing news about his teeth though!

You are such a great mom and advocate. Thank you again for sharing your stories.

Jade said...

Wow Jen, what an experience. I'm glad C's hygene was taken care of but I'm sorry it took so much out of both of you.

The clients I have worked with in these situations have always been given rohypnol, and diazapam to clam them. Keep in mind I work with kids between 2-15. So their systems require less than C's probably does. But I would definately push for the hypnotic. Hugs to you and C!

Nea said...

Scary stuff, but glad you both got through it. How did you manage C's nails when he was younger?

Tilly said...

Hi, I have just found you via 'Everything starts with an A' and I'm so glad I did. We've recently found out that our 4 year old has Asperger's and probably ADHD. Your blog is a mine of information and I know it's going to be such a help to me. I'm glad to hear that your son was able to get his filling and his nails sorted but what a traumatic time for you both. Good thing he won't have to have any more dental work for a while and hopefully they'll listen to you next time!

Paulene Angela said...

This is so traumatic for both of you although I definatley smiled at the Bennie Hill bit, think I would leg it too.
Hugs px

buffalodick said...

Must have been pretty stressful on him and you!

Cheryl said...

I am so glad it is all over and C is okay. How horrible and stressful for both of you to have to go through all that. It seems so needless when the rohypnol could have made it all so much easier for him (and you). I hope next time you and C will not have to go through so much stress and worry for you. It just seems so wrong. From one mom to another, here is a big hug ((((((HUG)))))) to you. I wish I could do more, I hate what you both have to go through, when common sense is ignored.
xxxxxxx

Zed said...

Hope you don't mind, I added you to my blog (well, it's new so sore excuse for a blog right now). I am also UK so good to see some UK info here, we seem to be behind America in disseminating information in this way.